Medical misinformation. Down the rabbit hole

Have you ever had to decide whether to start taking a medication, choose a course of treatment for cancer, undergo a surgical procedure, or have a screening test?

In a perfect world, your doctor would have guided you through your decision-making process, clearly describing important issues such as the “what, why, how, and when,” the pros and cons of each treatment option, making sure that you knew the potential harms and benefits of each choice. She would have asked you about your life circumstances– what do you need and want? For example, if the issue were chemotherapy, would you be able to drive to a chemotherapy treatment every other week? She would have asked you how you felt about your options and how they might work for you. And importantly, she would have based her advice not only on your particular circumstances, but on reliable evidence from scientific studies.

In reality, you’re likely to have 15 minutes or less with your doctor to make very complex decisions. In that rushed encounter, your doctor may neglect to tell you important information you need to make decisions that are best for you. She may not tell you about all of your options – including doing nothing – and the potential consequences of various choices. She’s not likely to have time to ask how you feel or how a certain treatment plan will fit into your life. Most troubling, the advice she gives you may be well-intended but based on unreliable evidence.

Feeling a bit like Alice in Wonderland yet? How are you supposed to make a choice about your health care when your doctor may not even have reliable information about your choices – and even worse, your doctor doesn’t even know that that information he’s using to guide you isn’t reliable? It’s not that your doctor is trying to harm you. It’s that physicians, too, are frequently caught in a web of misinformation.

Informed Consent

Any understanding of decision-making in health care is based on the concept of informed consent. As a patient, you have a right to know the potential risks and benefits of anything a doctor or other health-care provider does for you, whether that “anything” is starting an IV, prescribing a cancer drug, performing a surgical procedure, or any combination of treatments and screening tests. The legal term for that right is informed consent. In other words, before you consent to a medical intervention, you have the right to be informed about how likely it is to help you or harm you and what your other options are (for instance, what would be the most likely outcome if you did nothing?). Your health-care provider is responsible for explaining those risks and potential benefits to you in a way that you understand.

Historically, informed consent has been based on the premise that doctors know more than patients do about their conditions and possible treatments. The difference in knowledge between doctors and patients is referred to as asymmetry of information. Doctors are been trained to “look out for” patients’ bests interests because of their knowledge, a related concept called beneficience. Physicians spend years in medical school, studying just about everything that can go wrong with the human body, then additional years as interns and residents. To maintain their licenses, health-care professionals are required to pursue continuing education and to continue to learn about new treatments, medications, and research findings. The depth and breadth of medical training is truly incredible.

So when you are faced with a difficult medical decision, you should expect that your doctor has a lot more knowledge than you do – after all, that’s why you went to the doctor in the first place, right? Yes, your Google search may turn up thousands of webpages, some of which should help to inform your decision. But your physician’s training and experience provide a context in which to make those decisions.

Need to Know

All too often, doctors have difficulty communicating their knowledge and experience in a way that patients can understand. For you to be able to give informed consent, your doctor should explain all of the following:

What the problem is

What treatment she is suggesting

Any other treatments that could be considered

The anticipated benefits of each treatment option

The anticipated harms, including side effects, of each treatment option

The most likely consequences of doing nothing

Your doctor should be willing to discuss all options with you, including the option of doing nothing. He should give you a clear picture of the potential benefits and harms of each treatment or screening test. Any treatment or screening involves risks – even if it’s just a few days of anxiety while you are waiting for results of a mammography screening or lab test.

You deserve to have enough information to decide what is right for you, in your particular circumstances. Your age, overall health, personal circumstances, gender, life goals, desires, and interests should all be considered as part of that decision-making process.

Feelings count, too. Your doctor should check in with you about how you feel about the various options, asking questions like, “Are you leaning towards X or Y? Why?” and how the various options might fit into your life (including your budget).

Misinformation Mania

But what if it’s not so straightforward? What if the evidence that your doctor is using to make her decisions is flawed and unreliable? And what if your doctor, although highly skilled and knowledgeable, has little training in evaluating the hundreds of studies that are published every day in medical journals? What if he really doesn’t know the potential harms and benefits of the treatments he is prescribing? What if she doesn't have good information about other options?

Time to follow the White Rabbit down the rabbit hole.

Surprisingly, that “what if” is the case in most medical decision-making, according to medical information scientists and evidologists, Sheri Strite and Mike Stuart, MD. Strite and Stuart, founders of Delfini Group and authors of What You Don't Know Can Hurt You, are calling attention to the gap between medical research and information that your doctor may use to advise you on a medical decision. They estimate, based on reliable studies, that less than 10 to 15 percent of all medical research – including that published in major medical journals – provides reliable, useful information or is reported in a way that reliability can be assessed.

“One review of more than 60,000 medical studies reported that only 7% of the studies passed criteria for being of high quality and clinical relevancy,” says Stuart. “In another study fewer than 5 percent of the studies passed a reliability screening for a highly respected evidence-based journal.”

Strite and Stuart, who have trained physicians and other health-care professionals at health systems throughout United States, have found that few physicians and other health-care providers know how to evaluate medical research studies well enough to tell if those studies are reliable. In addition, many busy physicians rely solely on abstracts to keep up with the latest information in their field, rarely reading full journal articles. Yet one survey reported that up to 68% of abstracts in selected major journals contained information that could not be verified in the text of the studies.

What do you get when you combine absence of reliable evidence with physicians’ lack of training and time to critically evaluate studies and tendencies to omit information about different choices?

Besides a riddle worthy of the Queen of Hearts, you get what Strite and Stuart refer to as the “medical misinformation mess.” If studies published in the best journals by the best research institutions are unreliable or of uncertain reliability, and if doctors don’t know how to assess those studies – how in the world is a patient supposed to know what to do? Lack of reliability, from study to news story to physician interpretation, makes a mockery of informed consent.

Not surprisingly, most of this misinformation suggests that new drugs and medical interventions offer benefits – when in many cases there are none. Combined with lack of critical evaluation skills among doctors, inadequate information sharing, and pressure from patients to “do something,” misinformation often leads to the use of unnecessary medical interventions that do little good, waste billions of dollars, and cause serious harm. Some examples:

In 2012, in the United States, 590 cases of fungal meningitis, including 37 deaths, were linked to contaminated epidural steroids used to treat lower back pain and sciatica. Yet there’s no reliable evidence that the injections themselves do any good.

The medication Vioxx (now withdrawn from the market) may have been a factor in an estimated 60,000 deaths and 140,000 heart attacks that occurred in the United States between 1999 and 2003. If physicians had read the short summary of a major journal article carefully and correctly, they would have recognized how the drug’s harms far outweighed any potential benefit – and probably wouldn’t have prescribed the drug.

Roughly 63,000 deaths occurred after doctors prescribed encainide/flecainide for people who had suffered a heart attack and then developed a heart rhythm problem called premature ventricular contractions [PVCs]. If physicians had recognized that the studies were of poor quality, many probably wouldn’t have prescribed these drugs.

More than 9,000 women with advanced breast cancer died from treatment with high dose chemotherapy and autologous bone marrow transplant. About 42,000 women received the treatment. The treatment didn’t help any of the women, despite the $3.4 billion price tag for the study. The study was poorly designed, and if physicians were well-versed in study design, it’s likely that they wouldn’t have prescribed this treatment for their patients.

These deaths and injuries – and many others – probably could have been prevented had doctors better understood the peer-reviewed, published studies they were relying on when they wrote those prescriptions and developed those treatment plans. The deaths and injuries were not caused by medical errors, another serious problem in the U.S. health-care system. Medical errors occur when health-care is delivered incorrectly (for instance, giving someone the wrong medication or the wrong dose of the right medication). In the cases that Strite and Stuart describe, the well-meaning doctors who prescribed them just didn’t understand how dangerous those treatments could be.

Right Care

You don’t want the best health care. You want the health care that works best for you. That means care that is not too much and not too little, but, to invoke a phrase from another famous children’s character, Goldilocks, “just right.” It’s the type of care that the Lown Institute, a research and advocacy group that focuses on reducing medical harm, calls “Right Care.” Strite and Stuart point that “Right Care” is only possible if the information that doctors use is reliable and useful, and if doctors communicate that information well.

“'The medical misinformation mess' is due to failures in the key building blocks needed to support patient decision-making,” says Strite. “To make good decisions, physicians and patients need good information, good communications, and effective engagement.”

Steps to Right Care

How can you be sure that you are getting the right care? Unfortunately, the process is much like Alice trying to figure out how to nibble just the right amount of magic mushroom: You can’t. You can, however, take some steps to reduce your risks:

Recognize that the information your doctor is using may not be based on reliable science

Understand that your doctor probably doesn’t know that there are problems with the information – and that most reported results are unreliable or of uncertain reliability

If you don’t understand something your doctor tells you, ask her to explain it again or differently

Ask: It’s important to ask questions – and to understand the answers that your doctor gives. Bring a trusted friend or family member to your appointment. A second set of eyes and ears can often help ensure you have all of the important information you need to make your decisions about medical care. You or your friend/family member should also take notes – using a pen and paper. This will help to make sure you record all important information. If cultural or linguistic issues interfere with your understanding, ask if the clinic has a community health worker who can help to bridge the gap.

When your doctor suggests a medical treatment, ask the following key questions:

What do you think the problem is?

Why are you prescribing this medicine or procedure?

How do you think the treatment you are recommending will help me?

What are the risks of this treatment?

What side effects should I expect?

What other choices do I have?

What might happen if I choose to do nothing?

What is the quality of the evidence for this treatment?

How well has it been studied in people like me?

How might this treatment affect my daily life? My friends and family?

What is the cost of this treatment?

What would you do if you were me?

If your doctor recommends a screening or diagnostic test, ask the following key questions:

Why are you suggesting that I have this test?

How accurate is the test?

In what ways could I be harmed by the test?

How much does the test cost?

If test results come back positive, what choices will I have for treating the condition?

What would you do if you were me?

Confirm: To make an informed decision, you need to understand the information your doctor has given you. After your doctor has answered your questions, see if you can repeat the information back to him in your own words (in other words, paraphrase his statements). Start with a signal sentence such as:

“Let me see if I understand this correctly.”

“Are you saying that I have developed [condition] and that means that I can expect….?

Need to Know: Don't Be Afraid to Ask

Often, people are concerned that they may offend their doctors by asking questions. That’s rarely the case. Any reputable doctor welcomes patients’ questions. She may not have time to answer all of those questions at one visit, or she may not know the answers to all of your questions, but she should be willing to find a way to answer all of your questions. If she’s not, find another doctor.

Learn

It’s likely that you’ll first encounter medical information through news or online health information sites When information is filtered through one more layer – health journalists and bloggers – there is yet another chance for misinformation and misinterpretation, even if the original study was sound. For instance, all too often, medical “news” today is a regurgitated press release, lightly edited but with no challenge to research that involves a poorly designed and conducted study.

All too often, health journalists fail to recognize flaws in medical studies because they don’t assess the studies critically. And the growing world of online health information may be rife with misinformation. Even the pamphlets that your doctor or health plan distributes may be based on unreliable evidence. That's why it's important that you, as a health-care consumer, learn how to assess health news stories in popular media critically. Here are some things to look for when assessing a news story or online health content:

Objectivity: Does the website provide clear, well-balanced information? Any content that is supported by a drug company is immediately suspicious. Likewise, steer clear of any site that tries to sell you something directly.

Expertise: Read articles from major newspapers like the New York Times, Washington Post, Los Angeles Times, and others that are large enough to employ trained health journalists. If you’re relying on a small local newspaper, look for stories that come from syndicated news feeds such as Reuters, Associated Press, UPI, etc.

Certification: Online health sites should be certified by at least one of several watchdog bodies. HON code certification is one of the most rigorous, and means that a site has met specific criteria for quality. The HON icon should be prominently displayed.

Your Own Assessment. Read the story critically and carefully.

Nice to Know: How to Read a Health News Story

The best criteria for reviewing news stories about health care were developed by the folks at Health News Review, a “health news watchdog” site published by journalist Gary Schwitzer. After reviewing more than 2,000 stories, HNR staffers came up with the following 10 questions to ask of a news story. While the questions are designed for journalists to assess their own and others’ work, there’s no reason you can’t use them, too. The questions (in italics) below were developed by the Health News Review team; the explanations are ours:

Does the story adequately quantify the benefits of the treatment/test/product/procedure? In other words, did the writer clearly explain, using percentages and other numerical data, how much good the treatment did and how many people were helped?

Does the story adequately explain/quantify the harms of the intervention? In other words, did the writer clearly explain, using percentages and other numerical data, how much bad the treatment did and how many people were harmed?

Does the story seem to grasp the quality of the evidence? The journalist should discuss any limitations of the research, study methods

Does the story adequately discuss the costs of the intervention? In other words, does the story clearly discuss how much the drug, screening test, or other treatment costs, who will pay for it, associated expenses, and compare them to the costs of other alternatives?

, and any potential problems with or strengths of the study. If study results are presented without question or qualification, beware.

Does the story commit disease-mongering? If the story takes something that’s not that much of a problem and turns it into a disease, question its reliability. Disease mongering occurs when the definition of disease is expanded to sell more treatments.

Does the story use independent sources and identify conflicts of interest? The writer should have interviewed study authors and other experts in the field. If study authors were paid by a pharmaceutical company who made a drug that was studied, the journalist should identify that relationship, as well. It doesn’t necessarily invalidate the study findings – many top-notch studies are paid for by pharmaceutical companies – but it should be mentioned as it could introduce bias into the study results.

Does the story compare the new approach with existing alternatives? It’s great news if a new medication reduces fever, pain, and swelling. But what if ibuprofen or acetaminophen work just as well for most people, with fewer risks and lower costs?

Does the story establish the availability of the treatment/test/product/procedure? Many studies report on highly experimental treatments, often in animal models such as mice. Remember that it takes years and specific phases of clinical trials for a new medication to become widely available. The news article should be specific about the status of the treatment.

Does the story establish the true novelty of the approach? The story should clarify what is new and significant about the study results.

Does the story appear to rely solely or largely on a news release? Stories that are lightly edited news releases do not represent reliable journalism. They are public relations tools issued by study authors. Don’t believe them.

In today’s connected world, almost everyone can access original studies (although it might require a trip to your local library). If a news article interests you, go find the sources for the article. A search of www.PubMed.gov will turn up most medical research. Before you do, though, learn the basics of how to evaluate studies for their evidence. Here are a few key factors to think about when you're assessing a study for reliability:

What were the study outcomes? If the outcome measures were not something that is meaningful to a patient (e.g., change in a lab value) be careful about assuming benefit. The outcomes that are meaningful to patients are morbidity; mortality; symptom relief; healthcare quality of life and physical, mental, and emotional functioning.

How many participants were in the study? A study of a new medication in 10 people might not be as reliable as a study of that same medication in 10,000 or 100,000 people. Usually – but not always – small studies of less than 100 participants are of lower quality, according to Stuart,

Did the study compare at two groups of people, one that received the treatment and one that didn’t (i.e. a control group)? Were the groups similar? Were the patients and investigators blinded as to which group got each treatment? Studies are most reliable when they compare a treatment group to a control group. Researchers need to make sure that the two groups are similar in most ways (generally through a process called random assignment) and other factors that may affect the study outcomes are accounted for.

Nothing should be different between the study groups except for the intervention being studied.